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living with a chronic condition (part 4)

edited 30 November -1 at 12:00AM in Disability Money Matters
412 replies 20.5K views
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  • sammy10 wrote: »
    I told him I did and said I hadnt realised that they were so short staffed that they had the decision maker answering the phone.
    Nice one! It's ridiculous, what he said.
    "I am indelibly stained by hope and longing" - Nuts in May
  • black_pawblack_paw Forumite
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    well said sammy good one ! have to try to remember that one !
    the truth is out there ... on these pages !!
    <3
  • kaj70kaj70 Forumite
    153 posts
    On my application for DLA i did just write my bad days down. but i also made a statement to say that i have explained how i am at my worse. it helps and i found it reasuring that this was backed up by a Dr's letter, because on some days i dont feel to bad. so with the evidence coming from the specialist and gp i didnt feel such a frued!

    do other people feel really isolated through there illness. i know i am lucky enough to have car now. but i still fell quite alone at times, because of my illness, i have limited amounts of energy, and i feel my day is only about 4 hours long, as the rest of the time im sleeping or in too much pain to do anything :(
  • PaparikaPaparika Forumite
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    I feel very isolated, i need a wheelchair to go out, but whilst i can't get the chair over the doorstep unaided, then i am kinda housebound, but then again, getting yourself a good support network is a must, we have our fibro grp on fb that keeps me going, i may not always post, and just read... but it helps that i know i am not alone
    Life is about give and take, if you can't give why should you take?
  • purplecatloverpurplecatlover Forumite
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    cwta volunteering is allowed, must get a letter form place volunteering for stating no one else would be paid to do what your doing, your not getting paid and how many hours you will be working...that was for income support, but i assume incap benefit is the same as they count it as a change in circs. for dla unless your reporting a chage/improvement in your condition you dont have to tell them. (though cab told me the is would be fine and my dla would be looked at again and possibly reduced and if i started without telling them and they found out they would stop it). cats protection...i almost went to them too, ill tell you abut that elsewhere, and if i forget nudge me.

    sammy for many people epilepsy causes no care or supervision needs, and does not stop them fomr being able to work etc as it is controlled by meds. for the unlucky few like you its a nightmare and i agree with invasion. well done on relying thus to him on the phone.

    re isolation without the computer and internet connection i would be very very isolated. i have a few friedns around me irl, and i see them regularly but its online i come if im having a bad day. i know i couldnt cope without it, and without the general natter and support form online friends who read between the lines and help and provide distraction form my own crap.
  • kaj70kaj70 Forumite
    153 posts
    I know what you mean about the internet and computer, i would be lost without it. it really is a lifeline for many people. msn is great to chat to your friends when you cant get out, and sites like this offeer great support. and thanks to the internet i am now doing an Open University course. just to keep my brain working.
  • bevan840bevan840 Forumite
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    Hello Everyone :)

    I've come over as 2 people have suggested it now. (Hello BZ :))

    I'm 24 and have ME/CFS. Been diagnosed 4 years but specialist thinks I've had it for 6 years and they mis-diagnosed me for the first 2 years (no suprises there)

    Not having a very good day today (or even the last week) my stepsons brought me a nice cold 2 weekends ago and I am now in agony. On anti-biotics and steroids as also asthmatic and have bronchitis developing (just what I needed)

    I'm still trying to work although I'm going to insist me and DH swap cars as driving a manual is Very difficult and his is automatic. At the moment the worst part is my legs, extremely painful and that's when I'm sitting still!! Very difficult to walk, have crutches at home but my arms are just feeling lifeless so I know they would be no use to me as I'd tire even quicker. Time off work would be lovely but unsure if we could afford it right now, SSP wouldn't cover much at the moment and cant afford to lose 3 days pay before it kicks in, so any idea's on how I can carry on would be amazing :) I work full time (no idea how I manage it) on the third floor of an italian restaurant, I'm the office clerk and will be asking the staff if they can do the jobs downstairs as I can't manage with them at the moment, took me 20 mins to get up them this morning! Started college last week so I have that 2 nights a week till June. But it's to get me a better job with more money so I can reduce hours and still get same sort of pay :)

    I try to keep my legs as warm as possible but heat is also proving painful as well :confused: (If I were an animal I'd of been put down by now I'm sure)
    :idea: Jan 09. Debt @ LBM - £11936.55 Debt at worst - £12600.55 Current Debt (01/03/2012) £8,859.51 29.7% Paid off
    Honeymoon Fund £410.40/£6000 House Deposit £1.50
    :A Proud to be dealing with my debts. DFW Nerd 1177 :A
  • kaj70kaj70 Forumite
    153 posts
    Hi Bevan,
    wow, how on earth do you manage, i have just walked downstairs and im in agony. Its hard to find relief from the pain, as to hot makes it worse, then being to cold aggrevates it aswell. i do find my tens machine very relaxing, it doesnt take the pain away, but on the right setting it can be very theraputic. have you tried one of these. i wouldnt be without mine.

    I am not sure of your circumstances, and i dont mean to be rude or sound out of order, but do you claim dla, that would help with the car issue. i managed to get the higher rate with the same illness as you, i have suffered for ten years with it. although in my medical notes the words "MS" pop up quite a bit. although it has been discussed on my occasions its not my diagnosis. i have a brain scan almost every 2 years, so its as if they are waiting for it to happen.

    I feel for you and also admire your ability to cope, although i know it is extremely difficult to carry on everyday. i dont work, i was in the local secondary scholl doing behaviour support, but i had to give it up as i got to ill again. i have 3 children and on my own :( it gets very lonely sometimes, and i get very down by the way things are. sorry that had nothing to do with what i was writing to you about ...sorry :)
  • Welcome Bevan :)


    Just so you know, daily chat for people with chronic conditions takes place in the cafe thread. It's a bit of a support group, share your woes, and general stuff! More people post there than in here. Just wanted to let you know!
    "There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow." - Orison Swett Marden
  • edited 30 September 2009 at 7:26PM
    bigzippybigzippy Forumite
    4K posts
    edited 30 September 2009 at 7:26PM
    kaj70 wrote: »
    do other people feel really isolated through there illness. i know i am lucky enough to have car now. but i still fell quite alone at times, because of my illness, i have limited amounts of energy, and i feel my day is only about 4 hours long, as the rest of the time im sleeping or in too much pain to do anything :(
    Yep. I think we've all suffered from those feelings at one time or another... I've, like pcl (I think it was) said, found the internet a Godsend. I can't imagine how I would be now if I hadn't got messenger, Facebook, and here to stay in touch with "the outside world". I'm not generally bed bound, or house bound, but I do struggle to socialise much and when I first got so ill I felt very abandoned by my friends...unfortunately I'm still finding out, the hard way, who my real friends are. And the more you turn down social events because you're not feeling too well or that you'll be up to it, the less you get asked to go anywhere.:rolleyes: What would've been my closest/best friends a couple of years ago, I now don't see at all unless they come round here once in a blue moon, or I pop round to theirs or organise something myself and invite them.:rolleyes: Even their various birthday bashes :angry: It was even like that while I was planning my wedding and altho they said how excited they were and how much they wanted to be involved, I basically saw nothing of them.:cool:
    bevan840 wrote: »
    Hello Everyone :)

    I've come over as 2 people have suggested it now. (Hello BZ :))

    I'm 24 and have ME/CFS. Been diagnosed 4 years but specialist thinks I've had it for 6 years and they mis-diagnosed me for the first 2 years (no suprises there)

    Not having a very good day today (or even the last week) my stepsons brought me a nice cold 2 weekends ago and I am now in agony. On anti-biotics and steroids as also asthmatic and have bronchitis developing (just what I needed)

    I'm still trying to work although I'm going to insist me and DH swap cars as driving a manual is Very difficult and his is automatic. At the moment the worst part is my legs, extremely painful and that's when I'm sitting still!! Very difficult to walk, have crutches at home but my arms are just feeling lifeless so I know they would be no use to me as I'd tire even quicker. Time off work would be lovely but unsure if we could afford it right now, SSP wouldn't cover much at the moment and cant afford to lose 3 days pay before it kicks in, so any idea's on how I can carry on would be amazing :) I work full time (no idea how I manage it) on the third floor of an italian restaurant, I'm the office clerk and will be asking the staff if they can do the jobs downstairs as I can't manage with them at the moment, took me 20 mins to get up them this morning! Started college last week so I have that 2 nights a week till June. But it's to get me a better job with more money so I can reduce hours and still get same sort of pay :)

    I try to keep my legs as warm as possible but heat is also proving painful as well :confused: (If I were an animal I'd of been put down by now I'm sure)
    Hi bevan :wave: I'm sorry to hear you're doing it so tough at the moment - I've no idea how you manage to work full time with all this going on! It's nice to hear of someone around my own age who has ME too :)
    As far as the heat thing is concerned, I feel your pain! I've been told to do the routine ice and elevation thing with my damaged ankle, but the cold sets off the joint pains and spasms in the muscles. So then I have to warm them up again, which sets off the swelling process again which in turn gives me a weird pins&needles type sensation on the surface of my skin in various places...:rolleyes: You just can't win sometimes can ya?

    Feel free to join us in the (not so old) Crock's Cafe too bevan and kaj70, where the conversation topics are a little less restricted ;)
    "I am indelibly stained by hope and longing" - Nuts in May
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